Ds feeling terrified this morning

[claw2]

Ds has gone off to school this morning, he has a math test, PE (lesson he hates), a school trip and after school club.

He has 3 bags, school bag, PE kit bag and wellies in a carrier bag and can barely walk!

He hasnt been able to eat or drink anything this morning. He wont eat or drink in school either. He has sores on his lips, where he picks at his dehydrated lips.

Would it be unreasonable to email his TA and ask him to try and ensure that ds at least drinks something today?

No claw definitely not unreasonable. Poor boy that is alot to cope with on one day .

Hope he is ok

Blimey. That is a LOT for him to deal with.

Will he be met and chaperoned through the day?

He WENT right?

His taxi escort with take him into the foyer where CT and TA are.

Yep he went, without too much fuss, but ds never makes a fuss. He will just internalise, stop eating, drinking and pick at his skin. He will probably have a few tears in school (his way of not having to do what is being asked) IF ds ever refuses to do anything, I know it must be REALLY bad for him to refuse. He is overly compliant most of the time.

Yes he saw counsellor last week, it went really well from what I saw. She went and got ds while I was there. The idea being she introduced herself, then I leave after introduction.

Ds had a bit of a panic and was saying no, no, I want to tell you something before you go and then spilled out his worries about school that day to me. Told him you are in exactly the right place to speak about worries and maybe you could tell Mrs X, which he did!!

His counselling day would be today, not sure if they will fit it in.

I have emailed his TA and copied his counsellor in, just in case he is seeing her today.

Im just worried about him going a whole day without drinking or eating. I give him money every day to get a drink at break time, but he doesn't and his lips are really dry and sore.

Also yesterday he came home crying from school and in pain, with stomach ache and feeling sick. He sat on the settee doubled over, clutching his stomach and crying. Im not sure whether this is anxiety related or just the physical affect of not eating or drinking in school.

He sat and watched Pokémon, had some biscuits and a drink and felt better about half an hour later.

My theory is ds needs his needs met on the whole before he can eat in school, if that makes sense? I don't think it will be one thing, more like a knock on affect. Although he will drink, he just needs prompting when anxious (he doesn't like water, he will drink it, but just tiny sips. Compared to a whole glass of juice) in school all that is offered is water and he has to ask for it.

It seems he had an OT assessment yesterday. I knew nothing about this, other than he had been referred. He told me he saw a 'lady' and had to hop, do star jumps and write 'the quick brown fox jumped over the lazy dog'. So obviously an OT assessment.

I was hoping OT would be able to help with his eating, however i haven't spoken to her and been informed that she even assessed.

From what i saw of the dining hall, when visiting with ds before he started. When we attempted to enter the dining hall, he put his hands over his ears and refused to go in.

He now goes into the dining hall, but doesnt eat, he says he doesn't like what other people are eating or looking at their food and this puts him off. However, im sure if it wasn't this, it would be something else and if those things were removed he still wouldn't eat. He hasnt managed to eat in school for 4 years now.

He is expected to go into the dining hall at break time, if he wants to buy a drink too.

At home he has made lots of improvement. He will sit with us at mealtimes, but he wont sit next to anyone, he sits at the end of the table and has to watch his ipod. He would much rather eat alone or away from us. However, things are much more relaxed and not so demanding as school.

Hi claw how did your son get on , is there a nurses room at his school where he could maybe sit with member of staff to have lunch and a drink .

They should be able to make an exception about not having juice , would he drink , apple , orange or something healthy like milk that they can give him a lea way with .

Surprised he's able to concentrate and think at all having had nothing to eat and drink all day . I bring this up with school , lea , his consultant that he needs to be given a safe quiet place to eat on his own .

I ask the Headteacher how they feel going a whole day with no food or drink , if they decline , I'm really upset on your son behalf . I know he's not a big eater ( you said) but this isn't going to encourage him to even try to make an effort , if the noise and food isn't to his liking . They should try to make an allowance in these circumstances .

Your poor lad , hope he's had okay day , and managed some dinner this evening .

Hope ds was ok Claw

Hi Homework school were reluctant to separate him, as he is managing to go into the dining hall, they see that as a step forward, even though he isn't managing to eat, other than the occasional bit of dry bread. I can see their reasoning, however its been 5 months now and apart from managing to go into the hall, progress has come to a halt.

They did say I could send him in with a water bottle, which he may have sips of, as long as they encourage him to. Again I suppose I have to try it first.

Polter and Frizz I think he did ok, he didn't eat or drink anything, but he seemed to 'cope'. We worked extremely hard for 4 days at home on the time telling to get him to a basic level, so he didn't panic at test time when faced with a question. We practised what to do when he came across a time question etc, etc.

When I picked him up from after school he was very subdued and didn't talk last night. His lips look terrible with sores all over them from picking. He did eat some dinner though (in his bedroom, he refused to eat downstairs) and I made sure he drank loads.

In fact ds is acting a bit 'unusual' usually when he comes home from school, he tells me what he is worried about. He has stopped talking to me since he had appointment with counsellor and school started to do anxiety scale. He has also been injury free since.

My first thought, brilliant, he is feeling listened to in school, we are making progress.

My second thought, he tends to do this when he gets support of some kind, not because he feels better, but because he feels he has to be 'good'.

This morning when I woke him up, he was wearing his school uniform (despite going to bed in pj's) I asked whether he put his uniform on because he was looking forward to school, he said no, he hates school, he says he thought he would be 'good' and put his uniform on.

He had also poo smeared on the walls.

Is being 'good' a start?

I mean 'faking it' is sometimes used in therapy to aid the move towards where you want to be!?

I am hoping so Star.

Although for ds I feel being 'good' is more to do with his obsession not to do anything 'wrong' and he wants to be 'perfect' . His idea of his ideal self is very unrealistic and usually results in him 'failing' yet again.

When the taxi arrived this morning, he got upset and was crying, he told me he had been scratching last night and had red marks on his legs. He was afraid to go to school with red marks on his legs.

So it seems his idea of 'good', means scratching makes him 'bad'. He is then overly compliant and the consequence of this bottling things up, results in him scratching again.

He has stopped scratching a few times, it usually doesn't last long, as I fear he stops for the wrong reasons.

Claw is your son seeing someone from camhs , if not he needs an urgent / emergency referral .
To me this sounds like the poor child is torturing himself . Nobody can expect to concentrate , let alone get answers correct when they not eaten .
Ask , your gp , the consultant he's seeing about his food intake , even the counsellor , you mentioned he was seeing .
Being a perfectionist isn't easy , as the outcomes will never reach level you want .
Five months is a long time to eat nothing all day in school , drink .just because he's gone into the hall that's not them winning .

He sounds like a lovely compliant little boy , who wants to please and be liked , works hard . It's easy for him to get overlooked in a sea of others who are more dominant than him .

Please try and insist that he gets seen by a physiologist at the very least ,
Say to gp on referral , 1/ he's a perfectionist 2/ he's unable to eat & drink in front of other people ? Sensory though noise 3/ he's tortuning himself with withholding food and drink during whole school day . 4/ the pulling and scratching at lips and legs , self harming . 5/ any other things that need to be said for referral .

Sorry it's a very poor service if your primary age child is refused help when he's s obviously suffering . Your doing all you can by allowing him time and space to eat the little you can get into him when he's home , you and your son now need help to move him on .

Hope you don't think I'm over stepping the mark , but this has really tugged at my heart strings . Wishing you and your son all the best for the future .

Homework I don't think you are overstepping the mark at all. All very helpful suggestions.

We have been there and done most of what you suggest already, so very good advice and the way to go. Ds had a year and half worth of 1:1 therapy from CAMHS. He had an emergency mental health assessment in A&E more recently and was seen by CAMHS due his self harm/school refusal.

CAMHS are still involved in an advisory role and they have been advising myself and ds's new school, hence the counselling in school. CAMHS seem to think it is very much a school related/education issue and hence school should deal with it. I tend to agree with this. He doesn't have mental health issues as such, he has school related issues.

Ds has been seen by dietician when much younger, then attended a CAMHS feeding related group, then a specialist feeding clinic OT. He hasn't been able to eat in school since he started 4 years ago and has been severely anaemic too. His diet is extremely rigid at home. He eats lots of carbs and manages to eat enough of what he does eat at home not to lose weight.

No one monitors ds eating, weight, growth, diet or whether he is anaemic or not. Its down to me, to buy multi vitamins, get low dose iron from my GP and I am to decide if/when he needs a blood test to test for anaemia.

His new counsellor apparently works on eating disorders and ds was recently assessed in school by OT.

Sounds like school aren't dealing with the issues though , just expecting your son to comply , which god love him he's actually trying to do with very little support . (By going into dinner hall)
Why can they not work on him attending the dinner hall one day a week but has too maybe drink a milkshake drink that got high calories in . Rest of week he eats somewhere else , he needs to eat to be able to concentrate , surprised he's not had major issues with headaches , even fainting due to lack of food and drink .although given this has been going on for so long his metabolism will have slowed down considerable.
They continue with this till he's comfortable to move on to two days a week .
They also find him a quieter corner that he can sit and eat in .
School need to be more responsible , they are basically allowing your child to torture himself whilst in there care , to get him into dinner hall .
Sorry wish I had some answers , you must be at your wits end .

One last thought , could camhs not actually tell school how they should be dealing with some of issue around food anxiety , noise etc .
I'm sure some schools have come across kids who couldn't do noise of dinner hall , but to be truthfully bet very few schools have actually experienced of dealing with child with anxiety to this extent , which is where camhs are better placed to help .

CAMHS are pretty useless really and don't want to get involved with 'educational' recommendations, very vague. During last meeting with CT and CAMHS, CT got quite annoyed with their avoidance. He told them he was extremely worried about ds not eating, his level of anxiety and said he had never encountered a child with such low self esteem who cannot accept praise.

Their response 'our involvement was a successful return to school' and seen as ds was managing to attend full time, they would need to reassess. They also thought that ds had already had extensive therapy and not found it particularly helpful, as his problems continue and they didnt feel able to offer him more at that time. They wanted to send a form home and a form to school for ds to fill out, to 'get a feel for ds was currently at'. Both myself and CT told them form filling was pointless as ds's mood and behaviour can change in a second. CT and I decided their involvement was pointless unless they were going to provide a service and school are currently paying for ds to have counselling and for OT.

I dont think school have encountered a child who avoids eating/drinking to this extent before. I will probably be better off asking the counsellor or OT to provide them with strategies.

He took a water bottle today and it has come back almost untouched, literally about 2cm missing.

Oh claw , you must be so worried , does your son know what's stopping him from eating and drinking , this actually sounds like nobody has any ideas how to help your son .

Is there any way that you can get him assessed at a clinic that deals with eating disorders , not just local hospital or dietician , this has progressed beyond there help by sounds of it .

Could you try find a clinic and get whoever needs to refer him to them to do this . Some private clinic may help in such a difficult case . You could ring clinic explain situation to directors they may take him on cause of how complex his case sounds like .

This is me really drawing at bottom of my thinking . I will do some hunting for this type of think to see if can find few clinics for children with eating disorders that might help. Even if they just reviewed him and gave you a few other ideas to try.